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11.02.2011

grace

A new friend, Emily, whom I’ve never met in person, has an eighteen-month old son named Ronan who was diagnosed with the regressive, terminal disease, Tay-Sachs, when he was just nine months old. From what she’s written, it seems he likely hasn’t got long to live. I think of her and Ronan daily, sometimes hourly, and check in on Facebook and her blog Little Seal, to steal glimpses of her beautiful boy and to immerse myself in the poignant words she writes about life with her precious son.

I sometimes read what others write in response to her blog posts. Most entries are compassionate and understanding, often written by parents of ill children. One reader posted this comment:

Jeremiah 29:11

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Not to harm you? I think. I bristle at the words, the false image they conjure in my mind while contemplating my own son Calvin’s tragic health and developmental difficulties. I wonder if these words can possibly soothe her or whether they simply cut her to the bone—like they often do to me—grind salt into a gaping wound that she and her boy have inexplicably sustained. That’s how I still feel sometimes when well-wishers ignorantly toss their belief systems in my face—like a bitter pie—thinking somehow they know better than I the cause and/or destiny of my sick child, thinking their words will serve to make me feel better. The only sense I can make of comments like that—which I know are meant to console—is that they mostly serve to comfort the individual offering them, in an effort to make some sense of the incomprehensible tragedy of a sick and dying child. I'm not saying that the intention is wrong, but perhaps better kept to one's self.

When I tell people about Calvin and our struggles, about life's uncertainties raising a child whose brain isn’t complete and who suffers repeated seizures for which he must ingest copious drugs that have yet to succeed at stopping them, some tell me it's god's will and others tell me that I am brave.

Brave? No. Scared shitless? Yes. At times literally shaking in my boots. Bravery has little to do with being the mother of a chronically ill child, who at times seems to live on a thread of existence. We just do what we do, move through one moment to the next hoping that will make the future seem less daunting, less all-consuming, less suffocating, less hopeless. What else can we do but indefatigably love and care for and cherish our children as if there is no tomorrow—because maybe there won't be? It’s not called bravery; it’s called motherhood. And yes, it's likely there are a select few who'd abandon the challenge of caring for kids like ours, abandon the grief, the strife—their children—but perhaps not because they aren't brave but because they aren't strong. They aren't Dragon Moms, to use the term Emily so effectively coined, the term that I think perfectly describes the way I often feel.

When I read Emily’s words and view the muted, acid-tinted, dreamlike photographs of her son, what I see is not a brave woman but one with the grace of ages. If I let my mind wander she appears as a barefoot nymph with blushing skin and shining rosegold locks, her body loosely draped in a simple gossamer gown, Ronan gently cradled in her arms—a pure embodiment of grace. I see her loving embrace of Ronan—the way she delicately supports her son’s head with slender fingers just at the back of his little bird neck, like I used to do with Calvin. I see grace in the way her gaze seems to linger on him as if it would never end. I see grace in her reply to a stranger’s ignorant, probing questions about her dying child. Hell, I know I'd even see grace in her bitterness, her bark and her bite, her firebreathing struggle, in her grief, sorrow, despair, anger, self-pity. Because grace is honest and true, grace is unapologetic, grace cannot be put on.

And so we, mothers of these innocents who suffer, move forward one step at a time, perhaps gracefully, but only hoping to be brave.

In honor of epilepsy awareness month please share Calvin's Story. Help bring us one step close to a cure.

4 comments:

You are surprisingly generous to people who push their beliefs at you as you face the repeated, (unending) daunting work of helping Calvin. I look on them as thoughtless and smug, for they really have no idea. We each have our own beliefs, and must base our own coping strategies and feelings on what we ourselves believe. You're doing fine....you are remarkable.

I find such a huge reflection of my thought in your writing. Although my son fights different battles, our story as parents seems so similar.

I have all acceptance of those who chose themselves to believe that all this is 'part of God's plan', but I personally don't get it.I can only think to hate God, when I am told, its because he thought I was special, or could cope. WHAT ABOUT MY SON... he is being punished for my goodness? how does that possibly make any sense?

dear sweetchili,to me it doesn't make any sense. bad things just happen, and we try and make the best of it. i am sorry to hear that you must fight a similar fight, for you and your boy. my best goes out to you, too.xo, christy

My son Calvin was born six weeks early with significant neurological problems of unknown origin. When he turned two he was diagnosed with epilepsy, which eclipsed all other adversity he'd encountered. No drug or dietary treatment has completely controlled his seizures. I write about the challenges we encounter, and the great perspective we gain as a result. I post something several times weekly in an effort to increase epilepsy awareness, dispel the myths, promote understanding and inspire empathy, all in hope of a cure.